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BACKGROUND: Health inequities lead to low rates of cancer screening in certain populations, such as low-income and ethnic minority groups. Different interventions to address this have been developed with mixed results. However, interventions are not always developed in collaboration with the people they target. The aim of our article is to present the viewpoint of patients, survivors, advocates, and lay persons on interventions to increase cancer screening from a health inequity perspective. METHODS: We prepared talking points to guide discussions between coauthors, who included representatives from nine patient and survivor advocacy groups, organizations working for citizen/patient empowerment, and health equity experts. Perspectives and opinions were first collected through video conferencing meetings and a first draft of the paper was prepared. All authors, read through, revised, and discussed the contents to reach an agreement on the final perspectives to be presented. RESULTS: Several themes were identified: it is important to not view screening as a discrete event; barriers underlying an individual's access and willingness to undergo screening span across a continuum; individually tailored interventions are likely to be more effective than a one-size fits-all approach because they may better accommodate the person's personal beliefs, knowledge, behaviors, and preferences; targeting people who are unknown to medical services and largely unreachable is a major challenge; including professional patient advocacy groups and relevant lay persons in the cocreation of interventions at all stages of design, implementation, and evaluation is essential along with relevant stakeholders (healthcare professionals, researchers, local government and community organizations etc). CONCLUSIONS: Interventions to address cancer screening inequity currently do not adequately solve the issue, especially from the viewpoint of patients, survivors, and lay persons. Several core pathways should be focused on when designing and implementing interventions: advancing individually tailored interventions; digital tools and social media; peer-based approaches; empowerment; addressing policy and system barriers; better design of interventions; and collaboration, including the involvement of patients and patient advocacy organizations.
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Detección Precoz del Cáncer , Neoplasias , Humanos , Etnicidad , Grupos Minoritarios , Neoplasias/diagnóstico , Neoplasias/prevención & control , OrganizacionesRESUMEN
BACKGROUND: Policies to combat the COVID-19 pandemic have disrupted the screening, diagnosis, treatment, and monitoring of noncommunicable (NCD) patients while affecting NCD prevention and risk factor control. AIMS: To discuss how the first wave of the COVID-19 pandemic affected the health management of NCD patients, identify which aspects should be carried forward into future NCD management, and propose collaborative efforts among public-private institutions to effectively shape NCD care models. METHODS: The NCD Partnership, a collaboration between Upjohn and the European Innovation Partnership on Active and Healthy Ageing, held a virtual Advisory Board in July 2020 with multiple stakeholders; healthcare professionals (HCPs), policymakers, researchers, patient and informal carer advocacy groups, patient empowerment organizations, and industry experts. RESULTS: The Advisory Board identified barriers to NCD care during the COVID-19 pandemic in four areas: lack of NCD management guidelines; disruption to integrated care and shift from hospital-based NCD care to more community and primary level care; infodemics and a lack of reliable health information for patients and HCPs on how to manage NCDs; lack of availability, training, standardization, and regulation of digital health tools. CONCLUSIONS: Multistakeholder partnerships can promote swift changes to NCD prevention and patient care. Intra- and inter-communication between all stakeholders should be facilitated involving all players in the development of clinical guidelines and digital health tools, health and social care restructuring, and patient support in the short-, medium- and long-term future. A comprehensive response to NCDs should be delivered to improve patient outcomes by providing strategic, scientific, and economic support.
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COVID-19 , Enfermedades no Transmisibles , Cuidadores , Humanos , Enfermedades no Transmisibles/epidemiología , Enfermedades no Transmisibles/prevención & control , Pandemias/prevención & control , SARS-CoV-2RESUMEN
BACKGROUND: A reduction in the number of face-to-face medical examinations conducted for patients with noncommunicable diseases (NCDs) during the first wave of the COVID-19 pandemic has led to health care professionals quickly adopting different strategies to communicate with and monitor their patients. Such strategies include the increased use of digital health tools. However, patient preferences, privacy concerns, a lack of regulations, overregulation, and insufficient evidence on the efficacy of digital health tools may have hampered the potential positive benefits of using such tools to manage NCDs. OBJECTIVE: This viewpoint aims to discuss the views of an advisory board of patient and caregiver association members. Specifically, we aim to present this advisory board's view on the role of digital health tools in managing patients with NCDs during and after the COVID-19 pandemic, and to identify future directions based on patients' perspectives. METHODS: As an initiative under the NCD Partnership (PARTners in Ncds Engage foR building Strategies to improve Healthy ageing In Patients) model of Upjohn, a web-based advisory board of patient and caregiver advocates was held on July 28, 2020, to bring together key stakeholders from public and private sectors. RESULTS: The following key themes emerged: (1) technology developers should understand that the goals of patients may differ from those of health care professionals and other stakeholders; (2) patients, health care professionals, caregivers, and other end users need to be involved in the development of digital health tools at the earliest phase possible, to guarantee usability, efficacy, and adoption; (3) digital health tools must be better tailored to people with complex conditions, such as multimorbidity, older age, and cognitive or sensory impairment; and (4) some patients do not want or are unable to use digital health care tools, so adequate alternatives should always be available. CONCLUSIONS: There was consensus that public-private partnership models, such as the Upjohn NCD Partnership, can be effective models that foster innovation by integrating multiple perspectives (eg, patients' perspectives) into the design, development, and implementation of digital and nondigital health tools, with the main overall objective of improving the life of patients with NCDs.
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COVID-19/epidemiología , Cuidadores/psicología , Atención a la Salud/métodos , Manejo de la Enfermedad , Enfermedades no Transmisibles/terapia , Satisfacción del Paciente/estadística & datos numéricos , Telemedicina/métodos , Factores de Edad , Anciano , Humanos , Persona de Mediana Edad , Pandemias , Privacidad , SARS-CoV-2RESUMEN
BACKGROUND: Health equity can lead to disparities in cancer screening, treatment, and mortality. This systematic review aims to identify and describe interventions that used video or DVD formats to reduce health inequity in cancer screening and review the effectiveness of such interventions in increasing screening rates compared to usual care conditions. METHODS: We searched PubMed, Web of Science, Embase, and Cochrane databases for randomized control trials (RCTs) published until 18/01/2023 that compared intervention versus usual care control groups, with the percentage of cancer screening uptake during follow-up as an outcome. The risk of Bias was assessed with the Cochrane Collaboration tool. RESULTS: After screening 4201 abstracts, 192 full texts were assessed for eligibility and 18 were included that focused on colorectal (n = 9), cervical (n = 5), breast (n = 5), and prostate (n = 1) cancer screening. All were based in the USA except one and most focused on ethnicity/race, while some included low-income populations. Most of the video interventions used to increase cervical cancer screening reported positive results. Studies aimed at increasing mammography uptake were mostly effective only in specific groups of participants, such as low-income or less-educated African American women. Results for colorectal cancer screening were conflicting. Videos that were culturally tailored or used emotive format were generally more effective than information-only videos. CONCLUSIONS: Video interventions to increase cancer screening among populations with low screening uptake show some positive effects, though results are mixed. Interventions that use individual and cultural tailoring of the educational material should be further developed and investigated outside of the USA.
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BACKGROUND AND OBJECTIVES: Significant health inequities exist in screening uptake for certain types of cancer. The review question was to identify and describe interactive, tailored digital, computer, and web-based interventions to reduce health inequity in cancer screening and review the effectiveness of such interventions in increasing screening rates versus usual care. METHODS: We searched four medical literature databases for randomized control trials (RCTs) published until 12 January 2023 that evaluated interventions aimed at increasing the percentage of breast, prostate, cervical, or colorectal cancer screening uptake. Meta-analysis was not conducted due to heterogeneity among studies. RESULTS: After screening 4200 titles and abstracts, 17 studies were included. Studies focused on colorectal ( n â =â 10), breast ( n â =â 4), cervical ( n â =â 2), and prostate ( n â =â 1) cancer screening. All were based in the USA except two. Most studies focused on ethnicity/race, while some included low-income populations. Intervention types were heterogeneous and used computer programs, apps, or web-based methods to provide tailored or interactive information to participants about screening risks and options. Some studies found positive effects for increasing cancer screening uptake in the intervention groups compared to usual care, but results were heterogeneous. CONCLUSION: Interventions that use individual and cultural tailoring of cancer screening educational material should be further developed and investigated outside of the USA. Designing effective digital intervention strategies, with components that can be adapted to remote delivery may be an important strategy for reducing health inequities in cancer screening during the coronavirus disease 2019 pandemic.
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COVID-19 , Neoplasias Colorrectales , Masculino , Humanos , Detección Precoz del Cáncer , COVID-19/diagnóstico , COVID-19/epidemiología , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/prevención & controlRESUMEN
Background: In the European Union, the General Data Protection Regulation (GDPR) plays a central role in the complex health research legal framework. It aims to protect the fundamental right to the protection of individuals' personal data, while allowing the free movement of such data. However, it has been criticized for challenging the conduct of research. Existing scholarship has paid little attention to the experiences and views of the patient community. The aim of the study was to investigate 1) the awareness and knowledge of patients, carers, and members of patient organizations about the General Data Protection Regulation, 2) their experience with exercising data subject rights, and 3) their understanding of the notion of "data control" and preferences towards various data control tools. Methods: An online survey was disseminated between December 2022 and March 2023. Quantitative data was analyzed descriptively and inferentially. Answers to open-ended questions were analyzed using the thematic analysis method. Results: In total, 220 individuals from 28 European countries participated. The majority were patients (77%). Most participants had previously heard about the GDPR (90%) but had not exercised any of their data subject rights. Individual data control tools appeared to be marginally more important than collective tools. The willingness of participants to share personal data with data altruism organizations increased if patient representatives would be involved in the decision-making processes of such organizations. Conclusion: The results highlighted the importance of providing in-depth education about data protection. Although participants showed a slight preference towards individual control tools, the reflection based on existing scholarship identified that individual control holds risks that could be mitigated through carefully operationalized collective tools. The discussion of results was used to provide a critical view into the proposed European Health Data Space, which has yet to find a productive balance between individual control and allowing the reuse of personal data for research.
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Clinical trials to identify efficient treatments against COVID-19 flourish worldwide without much attention to patients' voice so far. As therapeutic interventions in the early phase of the disease are attracting more and more interest, we argue that now is the time to involve patients' organizations in the design of clinical protocols in order to define the most relevant end-points and assess the risk-benefit balance of new therapies.
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EUPATI Belgium (EUPATI.be) is an informal gathering of local partners who are interested in improving patient involvement in healthcare innovation and medicines research and development. EUPATI.be brings together various stakeholders from different areas related to healthcare including patients, academia and industry. In doing so, we create an innovative collaborative approach where actors from different backgrounds work toward improving patient involvement in medical research, and putting the patient at the center of the Belgian healthcare system. Previously, we performed in-depth interviews with a small group of stakeholders on patient involvement. Here, we elaborate on our previous findings by using a nation-wide survey to inquire into Belgian stakeholders' perception on patient involvement. To this end, an electronic survey was available in French, Dutch and English, and accessible for 11 months. Twelve questions were asked, including 11 multiple choice questions and 1 open question. The latter was thematically analyzed according to the framework method. A total of 117 responses were registered and descriptive statistics were performed. The majority of respondents could be categorized into patient, academia and industry, whereas policy makers, payers, and healthcare professionals were underrepresented. We identified several barriers that hamper patient involvement, which were sometimes more reported by specific stakeholder groups. Next, we found that various stakeholders still consider patient involvement as a passive role, i.e., medical subject in a clinical trial. Respondents also reported that the role of the various stakeholders needed more clarification; this was also confirmed by the level of trust amongst the various stakeholders. Existing and the wish for more collaboration with the various stakeholders was reported by almost all respondents. Based on this survey, we can define the potential of involving patients in the medical research and development in the Belgian landscape. Our results will help to understand and tackle the various barriers that currently hamper patient involvement, whilst highlighting the need for a collaborative landscape from the multi-stakeholder perspective.
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This article, coauthored by a patient with eosinophilic granulomatosis with polyangiitis (EGPA) initially presenting as severe eosinophilic asthma and his physician-specialist, discusses the use and management of oral corticosteroid (OCS) treatment. It also considers the importance of early diagnosis of a rare disease and patient education. The patient describes his journey from progressive worsening of asthma and eventual diagnosis of EGPA to long-term OCS treatment and then participation in a clinical trial for this rare disease, involving the introduction of targeted biologic therapy with OCS tapering. The physician describes the importance of patient referral to obtain a correct diagnosis and optimal maintenance treatment, the balance between risk of adverse events associated with long-term OCS use and benefits of disease control, and various aspects of patient participation in clinical trials. Finally, the patient describes the role of continual patient education in the management of disease and OCS treatment. These considerations can apply to all chronic inflammatory diseases requiring maintenance OCS treatment.Funding: AstraZeneca.
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Corticoesteroides/uso terapéutico , Síndrome de Churg-Strauss/tratamiento farmacológico , Síndrome de Churg-Strauss/psicología , Administración Oral , Asma/complicaciones , Enfermedad Crónica , Síndrome de Churg-Strauss/diagnóstico , Síndrome de Churg-Strauss/etiología , Diagnóstico Diferencial , Progresión de la Enfermedad , Diagnóstico Precoz , Humanos , Educación del Paciente como Asunto , Derivación y ConsultaRESUMEN
This paper considers the online localization of sick animals in pig houses. It presents an automated online recognition and localization procedure for sick pig cough sounds. The instantaneous energy of the signal is initially used to detect and extract individual sounds from a continuous recording and their duration is used as a preclassifier. Autoregression (AR) analysis is then employed to calculate an estimate of the sound signal, and the parameters of the estimated signal are subsequently evaluated to identify the sick cough sounds. It is shown that the distribution of just three AR parameters provides an adequate classifier for sick pig coughs. A localization technique based on the time difference of arrival is evaluated on field data and is shown that it is of acceptable accuracy for this particular application. The algorithm is applied on continuous recordings from a pig house to evaluate its effectiveness. The correct identification ratio ranged from 73% (27% false positive identifications) to 93% (7% false positive identifications) depending on the position of the microphone that was used for the recording. Although the false negative identifications are about 50% it is shown that this accuracy can be enough for the purpose of this tool. Finally, it is suggested that the presented application can be used to online monitor the welfare in a pig house, and provide early diagnosis of a cough hazard and faster treatment of sick animals.
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Crianza de Animales Domésticos/instrumentación , Tos/diagnóstico , Tos/veterinaria , Diagnóstico por Computador/veterinaria , Sistemas en Línea , Reconocimiento de Normas Patrones Automatizadas , Procesamiento de Señales Asistido por Computador , Enfermedades de los Porcinos/diagnóstico , Algoritmos , Animales , Diagnóstico Precoz , Modelos Biológicos , Valor Predictivo de las Pruebas , Espectrografía del Sonido/veterinaria , Sus scrofa , Factores de TiempoRESUMEN
OBJECTIVE: Reflex cough is a defensive response generated in the brainstem in response to chemical and mechanical stimulation of the airways. However, converging evidence shows that reflex cough is also influenced by central neural control processes. In this study, we investigate whether reflex cough can be modulated by attentional focus on either external stimuli or internal cough-related stimuli. METHODS: Healthy volunteers (N = 24; seven men; age range, 18-25 years) completed four blocks of citric acid-induced cough challenges while, simultaneously, auditory stimuli were presented. Within each block, four concentrations were administered (30, 100, 300 and 1,000 mM, randomized). During two subsequent blocks, participants focused their attention externally (counting tones). During the other two blocks, participants focused their attention internally (counting coughs). The order of attentional focus was counterbalanced across participants. Ratings of the urge to cough were collected after each challenge. Cough frequency was determined by audio recording. RESULTS: Cough frequency was higher when participants focused their attention internally vs externally (P < .05). Also urge to cough was greater during internal vs external focus (P < .05), but the effect was smaller in later blocks of trials. CONCLUSIONS: Reflex cough can be modulated by attentional focus. Internally focused attention may be a mechanism involved in excessive (idiopathic) cough, while an external focus may be introduced as part of treatments targeting excessive cough.
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Atención , Tos/fisiopatología , Reflejo/fisiología , Estimulación Acústica , Adolescente , Adulto , Tos/diagnóstico , Tos/psicología , Humanos , Masculino , Valores de Referencia , Estimulación Química , Adulto JovenRESUMEN
BACKGROUND: The presence of decoupling, i.e. the absence of coupling between fundamental frequency variation and energy envelope during phonetic crying, and its extent, reflects the degree of maturation of the central nervous system. AIM: We hereby wanted to assess the existence and extent of decoupling in term neonates (neurodevelopmental relevance) and whether an association between decoupling and clinical pain expression could be unveiled (clinical relevance). STUDY DESIGN: To assess decoupling in healthy term neonates during procedural pain, newborns were videotaped and crying was recorded during venous blood sampling. Besides acoustic analysis, pain expression was quantified based on the Modified Behavioral Pain Scale (MBPS). SUBJECTS: 47 healthy term neonates underwent venous blood puncture at the 3rd day of life. OUTCOME MEASURES: Beside the MBPS score, the correlation coefficients were calculated between the fundamental frequency variation and energy envelope of the cries. RESULTS: Based on data collected in 47 healthy term neonates, correlation coefficients varied between 0.20 and 0.68. The degree of decoupling displayed extensive variability between the neonates and also in different cry bouts in a crying sequence within an individual neonate. A negative association was found between MBPS value and decoupling (r(2)=-0.12), the same as for the intra-subject variability although less extensive (r(2)=-0.02). CONCLUSION: Decoupling only relates weakly with the amount of distress in 3day old newborns, even though a great intra-subject variability is present. This study suggests that there is no evidence of extensive decoupling as the newborn still has to fully develop the control of larynx and abdominal muscles.
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Desarrollo Infantil/fisiología , Llanto/fisiología , Dolor/fisiopatología , Humanos , Conducta del Lactante , Recién Nacido , Dimensión del Dolor , Umbral del Dolor , Flebotomía , Procesamiento de Señales Asistido por ComputadorRESUMEN
In this article, an automated and accurate mouse observation method, based on a conventional test for motor function evaluation, is outlined. The proposed measurement technique was integrated in a regular open-field test, where the trajectory and locomotion of a free-moving mouse were measured simultaneously. The system setup consisted of a transparent cage and a camera placed below it with its lens pointing upward, allowing for images to be captured from underneath the cage while the mouse was walking on the transparent cage floor. Thus, additional information was obtained about the position of the limbs of the mice for gait reconstruction. In a first step, the camera was calibrated as soon as it was fixed in place. A linear calibration factor, relating distances in image coordinates to real-world dimensions, was determined. In a second step, the mouse was located and its body contour segmented from the image by subtracting a previously taken "background" image of the empty cage from the camera image. In a third step, the movement of the mouse was analyzed and its speed estimated from its location in the past few images. If the speed was above a 1-sec threshold, the mouse was recognized to be running, and the image was further processed for footprint recognition. In a fourth step, color filtering was applied within the recovered mouse region to measure the position of the mouse's paws, which were visible in the image as small pink spots. Paws that were detected at the same location in a number of subsequent images were kept as footprints-that is, paws in contact with the cage floor. The footprints were classified by their position relative to the mouse's outline as corresponding to the front left or right paw or the hind left or right paw. Finally, eight parameters were calculated from the footprint pattern to describe the locomotion of the mouse: right/left overlap, front/hind base, right/left front limb stride, and right/left hind limb stride. As an application, the system was tested using normal mice and mice displaying pentobarbital-induced ataxia. The footprint parameters measured using the proposed system showed differences of 10% to 20% between normal and ataxic mice.
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Procesamiento Automatizado de Datos , Marcha , Locomoción/fisiología , Animales , Conducta Animal , RatonesRESUMEN
Environmental conditions likely affect physiology and behaviour of mice used for life sciences research on Earth or in Space. Here, we analysed the effects of cage confinement on the weightbearing musculoskeletal system, behaviour and stress of wild-type mice (C57BL/6JRj, 30 g b.wt., total n = 24) housed for 25 days in a prototypical ground-based and fully automated life support habitat device called "Mice in Space" (MIS). Compared with control housing (individually ventilated cages) the MIS mice revealed no significant changes in soleus muscle size and myofiber distribution (type I vs. II) and quality of bone (3-D microarchitecture and mineralisation of calvaria, spine and femur) determined by confocal and micro-computed tomography. Corticosterone metabolism measured non-invasively (faeces) monitored elevated adrenocortical activity at only start of the MIS cage confinement (day 1). Behavioural tests (i.e., grip strength, rotarod, L/D box, elevated plus-maze, open field, aggressiveness) performed subsequently revealed only minor changes in motor performance (MIS vs. controls). The MIS habitat will not, on its own, produce major effects that could confound interpretation of data induced by microgravity exposure during spaceflight. Our results may be even more helpful in developing multidisciplinary protocols with adequate scenarios addressing molecular to systems levels using mice of various genetic phenotypes in many laboratories.
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Conducta Animal/fisiología , Espacios Confinados , Vivienda para Animales , Sistemas de Manutención de la Vida , Sistema Musculoesquelético/anatomía & histología , Estrés Fisiológico/fisiología , Análisis de Varianza , Animales , Peso Corporal , Calcificación Fisiológica/fisiología , Corticosterona/sangre , Heces/química , Inmunohistoquímica , Masculino , Ratones , Ratones Endogámicos C57BL , Músculo Esquelético/anatomía & histología , Sistema Musculoesquelético/diagnóstico por imagen , Microtomografía por Rayos XRESUMEN
Hypoxemic patients with chronic obstructive pulmonary disease (COPD) are at risk of carbon dioxide (CO(2)) retention during oxygen therapy and hypercapnia in COPD is associated with an ominous prognosis. Rebreathing with oxygen mask is possible in practice and possibly affects CO(2) retention due to an increased inspired fraction of CO(2). Its effects on arterial partial pressure of CO(2) during oxygen supply have, to the best of our knowledge, never been studied. We measured the inspired fraction of CO(2) in eighteen non-hypoxemic stable COPD patients with a capnograph during a 5 min trial with two different modes of oxygen supply (oxygen mask without reservoir bag and nasal prongs, respectively at a flow of 10 l/min and 2l/min). We found no significant increase in inspiratory CO(2) concentration. These findings suggest that inspired fraction of CO(2) does not increase markedly during controlled oxygen therapy.